My son in the ICU: There’s a fungus among us.

I found a text that I wrote on September 12, 2013 to my day-care families and said that I thought I should be back to work by the 16th….that’s how well we thought he was doing.

That’s when Charlie bought his ticket back to Arizona. Relieved and optimistic were we. It was the next day, that Cory broke out in all the purple blisters and bruises that I described in the previous post. What a difference a day makes…

September 17, 2013

Charlie had left for Arizona.

The blood blisters and bruises all over Cory were multiplying for four days, still no clue what it was. They had sent bloodwork a few days prior, but a germ that’s sampled has to grow and takes days to do so to diagnose what it is. They had done the skin biopsy as well.

It was 6:10 AM. Rounds could be anytime between 6 and 10 AM, depending.

The usual wake up call from the nurse….”Mom? Mom? They are here for rounds, did you want to attend?”

“Yes!”, I jumped to my feet. Hoping today was the day for our answer of why Cory was in such intense pain and covered with the purple lesions, so they could treat it with the magic of the correct antibiotic, and he could overcome One.More.Hurdle.

He’s a track star by now.

I walked out of the glass doors in my PJ Bottoms, a T-shirt, wake-up hair, and rubbing my eyes. I was usually holding a cup of coffee by Rounds, but this morning was an early visit.

The familiar faces of residents, doctors, and Attendings(the Head Honchos) were there. There was anywhere from 10-15 medical personnel at AM rounds. Many,many were younger than me.

It felt like a Huddle. There was Team Kidney, Team Pharmacology, Team Pain Management, Team Infectious Disease, Team ICU, and Team Nurses would pop out of caring for Cory when the talking actually began. They were waiting for Team Bone Marrow Transplant doctors to arrive.

Something was different this morning. There were more of them here.

There wasn’t any banter among them, which often there was and which I enjoyed. Their smiles and small talk among themselves about the night prior or studies or what their dog did or how cool the new medical app on their I-pad was…..it was refreshing, a peek into life on the outside and a comforting sense of human-ness from them. But there was none of this this morning.

There were periods of absolute silence, where they informed me that we were waiting on the Attending from the Bone Marrow Transplant Unit to arrive. (That didn’t surprise me. The minute Cory hit the ICU, the Attending from the BMT Unit became his daily doctor.)….

But the air while we waited was different than other mornings we had waited. I started rocking back and forth on my heels, my arms were crossed and I was clenching my teeth. My Mom Instincts were NOT getting good vibes. The automatic doors to our ICU pod opened and in walked the Bone Marrow Transplant Team.

The Attending (Head-honcho), looked as put-together as ever, and along side her was one of Cory’s physicians that was with him from the beginning of his Leukemia diagnosis. She apologized, she looked very serious, and she didn’t make eye-contact with me or smile…which was also different. (We were kind of friends by now we had chatted so much…she had two boys around Cory’s age, I knew the rundown on the new decor going into the BMT unit that would be “softer colors, and a homier feel”, etc.) Two women chatting, but Not Today.  Today she was “The Doctor.”

This. Was. Not. Good….I knew it.

An ICU resident started , “Cory Powell, age 25, blahblahblahblah….”. I mentally checked out while they ran down his stats and what meds he was getting, what nutrition he was recieving, basically a review of what we all already knew.

“Stay calm, whatever it is… stay calm, breathe, breathe.”….I was continually coaching myself for composure, for mental focus, and for, well, Sanity.

The taking-turns-talking baton was passed to the next physician, the guy behind the computer-on-wheels with the big sign taped to it that said, “DO NOT USE THIS COMPUTER FOR ROUNDS”.

This computer, was here, AT ROUNDS, Every Day, being pushed around by a different Dr., which usually cracked me up and I even ribbed them about it on a good day.

Today, I only became laser attentive to the mouth moving behind the computer as he looked up and down at the screen as he spoke. “The blood work was taken on 9/13 and infection was found in the blood, there was no growth prior, but they have determined the preliminary growth on the sample is a fungus.”

A Fungus. A FUNGUS. okay.

I was listening for what bacteria or what virus had this time attacked his weak immune system and it is a fungus? …,…Didn”t even know up until this point that that was A Thing.

The baton was passed to Team Infectious Disease which backed up the findings. The biopsy had indicated a fungus as well.

Mold.

Take that in…..Mold. AS IN CHEESE.

But it wasn’t on cheese that you could throw away or cut the mold off.

It was all over MY BABY…..EATING at him from the inside out.

“How? What?? How did this happen?” I stammer. Huh? I just kept thinking, “Huh????”

“Well, we are going to meet later and discuss that in more detail and where we go from here, at….when can you meet, Dr. so-and-so, and Dr. so-and-so, and Stan, does 1 work for you? Ok, I’m in surgery at 12:30, Sue is at lunch at 1:00 and Riley is getting her nails done at 2:00, so let’s make it 3:00…..” says the Attending.

(Not really…obviously thats not really what was said, but that was the level of importance of whatever I heard TO ME—the mother of the child you just informed me is decomposing while alive like a slice of bread that has been in a warm plastic bag too long—-and you want to wait UNTIL 3:00 to explain this to me???)

One of the Attendings is making all the arrangements for us to meet later around their schedules—with the other Attending—and the Primary, and the Resident,… and the janitor? “Let’s call the flipping janitor”, my angry mind sarcastically says in my head.  (remember that sanity part…..I feel myself teetering) They are all talking around me, and my head is spinning and I’m physically feeling dizzy.

“Will 3:00 work for you?” Oh, they are talking to me. “Yes….. I’m not going anywhere.”

I turn to walk back in the dark hospital room. I sat on my chair-bed and stared at Cory, the Cory I’d now grown used to seeing lying in the bed on his back with beeps and lights and lines as his appendages. My Cory that I couldn’t touch because it hurt him.

And I didn’t cry.

I was cried out and numb and angry. I thought about how over the past weeks in the ICU (3 weeks that felt like 3 months), Charlie, Dave and I kept saying and cheerleading and being positive and oh,so hopeful….”Well, you know, he just keeps moving forward. 3 steps forward, 1 step back….2 steps forward, 1 step back…4 steps forward, 2 steps back. As long as he keeps going forward.”  My gut knew this was more than 1 or 2 steps back….they didn’t call for a Meeting of the Minds at 3PM in a conference room for a couple steps back…..

I stared in absolute Awe at the man in front of me, lit up only by a nurses light and blue and red lights on his pole. And I waited for 3:00.

cory handsomeDay 47, Journal Entry from Cross Country Bike trip : “Ugh. Today was rough. Very pretty, but I couldnt get very far and I feel like I just did 100 miles. I didn’t get on the road until noon, and by then it was super-windy. The mountains were fabulous. After the initial climb, I got a nice break on some relatively flat ground and even some downhill. After that though, the road turned and a heavy wind has been in my face since, as well as maintaining a constant uphill drive. Overall, very taxing, but I managed some great pics. I’m camped at the top(ish) of a hill behind a tree. I’m going to sleep and thinking about Downhills & Slight Breezes.” —Cory Jay Powell

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